Eight families have reached an out of court settlement with the government over care for disabled relatives.
The government and eight families have reached a settlement over care of disabled family members. Photo: 123rf
The King case dates back to 2008 and involves 13 plaintiffs from eight families who cared for their disabled child or spouse without being paid between 2002 and 2012.
Their case was due to be heard in the High Court next year, but has been settled this week.
Peter Ray broke his neck and became a tetraplegic 49 years ago.
His partner Rosemary McDonald has been his full-time carer for 20 years.
He said the confidential settlement recently reached between themselves and the Ministry of Health is a start, but he was still frustrated.
"We're three quarters of the way there," Mr Ray said.
"They've got to change it so family carers are treated like any other carer.
"Because I'm tired of the bullshit, reading their documents about the disabled person being put in the centre, giving them choice, independence, rah rah and it never happens."
Ms McDonald has never received a wage for looking after him, and they have been living off the supported living payment from Work and Income and his pension.
Mr Ray said the payout would help them, but it would not change what was wrong with the system.
"Rosemary won't get paid. She hasn't had the chance to save or have a Kiwisaver... anything like that. It's heart-breaking and soul-destroying cause you know other people are getting it (but) you aren't."
The government's Funded Family Care policy was introduced in 2013 after successful court cases taken by those who care for disabled family members.
It has been a costly exercise, with the series of cases costing the Crown at least $2.6 million. The Crown has lost all three cases.
Jane Carrigan is a disability advocate who was involved in one of those cases.
She said while the settlement was good news for the handful of families involved, there were still hundreds receiving nothing.
"Unfortunately it continues to leave approximately 1600 other families out there who also care for high and very high needs adult children in the home, to continue to be on the receiving end of unlawful conduct from the Ministry of Health in the application of the Funded Family Care policy."
Ms McDonald said the current system did not acknowledge the burden that unpaid work placed on a family.
"When you know that your disability and your need for support is keeping your most trusted carer out of the paid workforce and quite often is on a benefit, you do not have the dignity of paid work, which is important," she said.
"That can be a real burden for the disabled person."
Despite resolving this matter, the Crown still faces another court case next year, where it will have to defend its policy of requiring severely disabled people to employ their parents as caregivers.